Disappointing others

[Enidah]

How do you deal with disappointing others? I was supposed to go visit my daughter across the country in a couple of weeks and realized I am just not up to it. The last few months have been difficult including a painful eye surgery. My heart is a little broken and I just feel awful about how sad she is and there isn't really anything I can say to make it better. Parkinson's is such an irritating thing for many reasons but one being that outwardly we can look okay and you sure can't describe to somebody how it feels. I am finding that I really have to put myself first or I pay the price. But there is a price in this also.

[Kia17]

Sorry to hear you have been through the difficulties. Think positive and do what you think is sensible . There is no such things as good and bad or right and wrong.

[Enidah in reply to Kia17]

Thank you for that.

[ConnieD in reply to Enidah]

I understand I at times feel guilty if I’m not up to something. I try and push myself at times and do but when you really can’t don’t overthink it. I think a lot of us with this condition have a people pleaser personality which is wonderful in many ways but sometimes with PD we have to learn to say no and try our best not to feel guilty about it. Hopefully our family and friends will understand!😊💕

[Enidah in reply to ConnieD]

Thank you, Connie. That is very helpful. I am certainly one of those. I hate making people unhappy especially my children. Taking care of myself first is really hard to do and yet necessary and I sure need to drop the guilt.

[ConnieD in reply to Enidah]

I feel the same. I never want to disappoint anyone, so I’m still working on letting go of the guilt because it only adds more stress that isn’t good for PD.

[Chicafromchitown]

Enidah, I recently went away for 5 days with my husband almost against my will because I was afraid I wasn’t going to be able to make it, since my legs are very weak and it involved a lot of walking, thank God it didn’t even felt that I had pd I was so surprised that I was able to do it. You say you’re going through a difficult time I am sure your daughter will understand. Hope you feel better soon. 🙏🏽

[Enidah in reply to Chicafromchitown]

Thank you. I know what you mean I have experienced that too on trips.

[park_bear]

Going forward arrange for family to visit you instead of vice versa.

[Enidah in reply to park_bear]

Absolutely. You're right it would be a lot better.

[Limpmaster]

That's a tough one. I deal with this in the context of my job. I feel bad sometimes because I used to be such a go getter about work but now I don't have as much energy. My employer seems understanding about my needs and assures me that my work product is good but I know I'm not the person I was. I too. have trouble explaining to people how this disease makes you feel. Take care of your needs, you know yourself. On the other hand you may be pleasantly surprised by how invigorating a trip to visit family can be.

[Enidah]

Thank you for that. This is one place I know I don't have to explain my symptoms.

[Lionore]

I hear you! Recently have become anxious around travel since I travel alone and my energy level can go south almost without warning. I no longer take early morning flights, look for non stops. Don’t go everywhere with my grandkids, rest when needed, remember that time with family is precious and worth it. I can take extra medication if needed; knowing that has a calming effect. It’s still better for me to travel to see my family than to expect them to incur the expense of traveling to me.

[Hidden in reply to Lionore]

If you can afford it, why not share the extra expenses for visiting you instead?

[Enidah in reply to Lionore]

Like you because I travel alone I'm pretty careful about when I fly and so on. It hasn't been a problem it's just seems this time it caused so much anxiety which I just don't cope with well anymore.

[AaronS]

Personal opinion:

We As PWP tend to not talk, if you talk stuff gets real, the Parkinson's becomes the nightmare we never wanted to become true. If you don't talk it goes away .... in your mind anyways.

The matter of fact is we have limits and everyone with Parkinson's is at different limits.

Why am I saying this:

Talk to your daughter open and freely, obviously you have a great relationship being you go out of your way to visit her and family. Explain what it's like for you, explain one day might be awesome but the next 3 suck, explain that you can't call it at all. And mostly dont hife the Parkinson's from your family as they are not silly they have seen you go from nothing to your current conditions.

It's just a glass half full scenario.... your still in the same situation but it's being managed better, expectations are at least being worked with, you will feel less disappointed as you will know people understand you better

[Enidah in reply to AaronS]

I don't have Tremor dominant PD so I go around telling myself that I look normal then when I'm in my yoga class for people with PD & MS with all the big mirrors I noticed how my right hand and shoulder and probably whole right side isn't very functional. Just writing that sentence is scary I guess I try pretty hard to ignore this disability. My identity in my life has been tough and strong and getting things done. Oh dear, what a change.

[PDGal4 in reply to Enidah]

I understand. I am similar. Since I don’t have tremor, think I can hide from myself and others. Pretend it doesn’t exist. An ugly disease and agree as well, near impossible to describe to someone who doesn’t have it.

[Jumex2017]

I’m sure she will understand . I will . I know how it is with pd as I see my husband . There are days when he will help me with the dishes and there are days he sat like a king waiting to be served . And he tells me he really couldn’t !

[1rocketman]

Maybe it would be helpful to send her material or a website that outlines some of the inexplicable things you are going through. At times, when my husband feels stiff and addle-brained, I have to become his mouthpiece and either talk more to hide that fact, or have to explain to people what he may be feeling. His condition is confusing to some because he doesn't have the tell-tale tremors. I sympathize with you that it is not an easy thing to describe. Sometimes I just explain that he's tired, to save myself from having to detail his symptoms.

I'm sorry your daughter feels sad, but you need to take care of yourself, as number one priority now.

My husband and I spent many years doing for our children at the drop of a hat, but PD was the game changer. We had to learn to be comfortable with being a little selfish with our time, wants and needs.

Sounds like a loving, but frank discussion is in order with your daughter, so that you can help her understand your needs and limitations. Don't forget there is also Skype if you can't make the trip!

[Enidah in reply to 1rocketman]

Thank you for that reminder about Skype. I have never used it but I have an iPad and she just got one so that would be pretty easy.

[Hidden in reply to Enidah]

Use FaceTime. Much better and comes with Apple iPad.

[grower]

I'd bet that your daughter may be sad that you can't come and visit but her main aim would be to know that you're happy.

[Maxjc]

Hi Enidah. It is so hard to know that you have disappointed someone...but isn't the fact that they are disappointed that you won't b coming, a measure of how they feel about you.

They will understand that it was not easy for you to come to the decision not to travel.

Two weeks ago, I backed out of the security line at the airport...I knew travelling to visit my best friend in the whole world, was the wrong thing to do...I left it till the eleventh (plus) hour. It hurt...both of us...but I did the right thing...I stayed home in the comfort of my own place, knowing I wasn't going to be a burden to her and her family. These things are sent to try us..for sure, not for the first, or last time. You did the right thing, absolutely, to put yourself first. After all, its you who will have the price to pay.

Be well. Be kind to yourself

[Enidah in reply to Maxjc]

That response made me feel much less alone. I could relate so completely. We try and try to do our best for the people we love but sooner or later I guess PD makes us prioritize differently. It's an adjustment. Thank you!

[munchybunch]

A counselor once said to me to have on my fridge this comment - am I Debbie prepared to disappoint others to be true to myself? You know you have disappointed but you ve been honest !

[Enidah in reply to munchybunch]

I guess I'll get lots of practice disappointing others and get better at it. Taking care of myself first is like using a muscle I've never used before.

[jeffmayer]

I think we have all been there you look well and feel like shit its hard for someone to grasp unless you have pd unfortunately even if its family you have to come they will just have to understand

[Bella395]

The visit won't be a good one if you are so unwell. It will distress you and your family. Best to stay at home and try not to worry about disappointing anyone. Your instinct is probably right.

[Enidah in reply to Bella395]

Thank you for seconding my opinion. It helps.

[Stazina]

I'm sure your daughter will understand that you are feeling ill. Try to verbalize to your daughter that you would be unable to function if you make this trip at this time and you're working towards becoming stronger so you can visit. Yes there is dissapointment, but hope gives way to the possibility of triumph. You'll make it there, but just not now. I'm sure your daughter loves you enough to want you to stay home for now. Best of luck.

[ddmagee1]

I have been faced with a similar scenario. My Mom is 95, and lives alone in the summer. So, it's a 9 hour drive, from where we live, to her summer home. I have 2 brothers, and 2 sisters. So, one of my sisters lives in the suburbs, of the city, where my Mom has her summer home. She seldom can come visit, or help my Mom, because, in her 70's, she has rheumatoid arthritis, and her husband has myasthenia gravis. Her children live in the area, and come and visit once in a while. My youngest brother lives about 4 hours, from where my Mom lives. He comes up and helps several times, during the Summer. My other brother lives in Florida, and that's where my Mom goes during the winter. My other sister lives in California. She visits twice a year. So, I am put under a lot of pressure, from my siblings, that I, too,should come down to my Mom's place, and help during the summer. I visit a couple times, when my daughter drives me down. I can drive around town, but long distance driving defeats me. My wife has metabolic syndrome, where she has diabetes, kidney problems, and heart failure. She's had coronary heart bypass, several hear attacks, and stents put in. So, essentially, I'm her caregiver. I am battling Cerebellar Ataxia, and Parkinson's Disease, so it's hard for me to be able to help much with my Mom. It gets frustrating. Finally, this year, my brother in Florida, and I arranged for a lady to come in and clean my Mom's house each week, and drive her to the grocery store, bank, shopping, post office, and Dr. appointments. So, it seems to be working better.When I take Sinemet, and my other medicines, I look, outwardly, fairly normal, and like I should be able to do most things. As many people, with these ailments, will attest, though, looks are deceiving! So, it's upsetting to me, when I think that some members of my family, don't understand the reality, of what I have to go through, each day, trying to help my wife, and dealing with my own medical problems. So, when some of them tell me that I'm not doing my fair share, of taking care of my Mom, they are giving me guilt trips. It's hard to deal with that, especially when I don't want to be the cause of family squabbles. I try to get along with everybody, but I'm just not able to help much with my Mom. I'm at the point now, that if people don't understand, that is there problem! I help when I can. It's sort of like walking a tightrope, where no matter what you do, it's just not enough to please everybody!

[Enidah in reply to ddmagee1]

Ddmagee- your response made me cry. I could relate so completely and it's such a sad situation. I didn't even get into all that side of my life. My 97 year-old mother, still alive and kicking left her power of attorney in the hands of my brother years ago so when she fell a year ago and then was declared incapacitated mentally he was able to put her into a rather horrible facility and not let her go home with paid help but instead moved a member of his family into her home. My sister lives out of state and has her own serious health problem. I live close to where my mother is now and so at first was up there every day until I realized it was doing me in. I have it down to two days a week and I try to take her food she likes and anything else I can think of. It's been pretty horrible and just in the last month or so I've been able to detach enough to not be utterly miserable. I've had to realize that she signed all that paperwork making him trustee with power of attorney and there's not a lot we can do to unwind that which she put together. Broken hearts all around. Your last sentence really got me. We try so hard. Just know that when you feel exhausted and burdened with all that there will be somebody else also dealing the best she can and no doubt disappointing people left and right.

[reedboat2]

Traveling is hard on me too. Mainly I feel that's due to disruption of my exercise and diet regimen. In 2017 I skipped out on a family reunion on the E Coast. Last year they all came out here to CA. We all do what we can. Try to be kind to yourself.

[Enidah in reply to reedboat2]

Thank you. I think that's the way it will have to be for my family also.

[LTT0019]

The progress of PD is so different for each person. I was doing so well until about six years post diagnosis. I had to call my best friend to say I would not make our annual wine tasting festival. I could not believe I did not feel well enough to do the walking/standing. I waited until one hour before I was suppose to meet the group. Now I understand with PD you never know how you will feel on any given day. This is travel within one hour of home or a day trip.

I had my plane ticket, partially packed and ready to go in a few days to my nephews high school graduation. I just could not do it. I thougt about all my current issues (mobility) and could not figure out how I was going to handle them alone. Stress,,,,stress....stress

I had a normal.

Perhaps I will improve enough to be able to do more of my old activities. If not, I will find my new normal.

Thanks, it is good to know I am not alone.

PS I am/was a people pleaser and I do not like asking for help. Had to change.

[Enidah in reply to LTT0019]

I am also 6 years post diagnosis. 8 1/2 years since getting first symptoms. I just went to the department store to get my son a little something for his birthday and couldn't believe how hard just doing that was. Driving with dyskinesia is just so difficult and I'm trying not to take as many meds but now my right arm and shoulder are killing me. I've been pretty fortunate up until now with my PD progress so this is as you say a new normal and I have to adjust. Hard!

[LTT0019 in reply to Enidah]

Yes shopping is hard. I have discovered online shopping. Amazon

I do not do department stores or malls.

Next thing to try is the grocery shopping that you order online and they get it all bagged up for you. My back, hip and legs hurt after about 30 minutes of shopping.

Symptom which I do not have anymore heart fluttering, BP jumping around sweating. Those symptoms were very scarry and I ended up in the ED twice. So, on the bright side I am glad that is not my new normal.

[rsears57]

Did you offer for her to come to your house and you could pay the bill

[Hidden]

Enidah, my father passed away this year in July and I am still heartbroken because I have not been able to visit him in 2 & 1/2 years. He was 82. I am just not able to get over it.

I was briefly able to see him before he died. I cremated him the next day and miracle of miracles, I was tremor free for one day. That's the only consolation.

Before it is too late, ask your daughter to visit with you. Take steps now!!